New Guidelines for Huntington Disease Include Physical Therapy Interventions


A combination of different physical therapy interventions designed to improve fitness, motor function, and gait are all recommended when guiding clinical practice for patients with Huntington disease.

Martha Nance, MD

Martha Nance, MD

New recommendations published by the Huntington Study Group (HSG), a world leader in conducting clinical trials in Huntington disease (HD), suggest patients with HD should undergo aerobic exercise, resistance training, and supervised gait training as part of their physical therapy routine.1

The guideline authors noted that aerobic exercise and supervised gait training was supported by strong, grade A evidence. Additionally, weak, grade B evidence suggests that exercise training can improve balance without reducing falls; inspiratory and expiratory training can aid breathing function and capacity; and training of transfers, getting up from the floor, and caregiver strategies for mid-stage disease involvement may improve performance.

“Until we find a cure for Huntington disease, the primary goal is to optimize function and quality of life for our patients. These guidelines promote evidence-based care for the patients of today—by HD specialists and non-specialists alike—while at the same time identifying topics for future research,” Martha A. Nance, MD, chair, HSG Family Education Committee, and director, Huntington’s Disease Society of America Center of Excellence, Hennepin County Medical Center, said in a statement.2

In 2009, an original evidence-based Clinical Guidance Document was developed by the Physiotherapy Working Group of the European Huntington Disease Network (EHDN), outlining optimal physical therapy management for patients with HD and facilitating uniformity of care internationally. Since then, multiple studies have examined the efficacy of physical therapy interventions, which ultimately led to a revision in 2017 to incorporate the new literature.

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Using the Joanna Briggs Institute (JBI) methodology, the authors performed a systematic review of 23 quantitative studies and 3 qualitative studies extracted using JBI standardized extraction tools. Results from the studies showed that physical therapy interventions can improve motor impairments and activity limitations in patients with HD. Using those results, researchers aimed to expand and provide specific recommendations to guide clinical practice.

Following data extraction, a custom survey was developed and distributed to members of the HSG, HD Centers of Excellence, Degenerative Disease Special Interest Group of the Academy of Neurologic Physical Therapy of the American Physical Therapy Association, and the Physiotherapy Working Group of the EHDN to determine current treatment practices around the world.

In total, 45 of the 102 respondents endorsed working with individuals with late-stage HD. Of those 45, 82.2% endorsed the use of positioning, 71.1% used range of motion exercises, 73.3% used active movement, 48.9% included respiratory exercises, 88.9% incorporated education, 35.6% reported using additional interventions for late-stage care, and only 2.2% of respondents did not use any of these strategies.

After culminating evidence, researchers formed 6 action statements with recommendations attached. Of the 6 action statements, 2 had A grade evidence and 2 had grade B evidence. No recommendation was given for the final 2 action statements.

Action Statement 1: Effectiveness of aerobic exercise paired with strengthening exercises in persons with HD. Grade A evidence from 6 separate studies that evaluated the impact of exercise (aerobic, strengthening, and general conditioning) and physical activity led researchers to suggest that physical therapists should prescribe aerobic exercise (moderate intensity 55%-90% heart rate maximum) paired with upper and lower body strengthening 3 times per week for a minimum of 12 weeks to improve fitness and improve motor function.

Action Statement 2: Effectiveness of gait training in persons with HD. Using grade A evidence from 14 studies that examined the effects of exercise programs on clinical and mobility measures, researchers recommended that patients with HD should receive 1-on-1 supervised gait training to improve spatiotemporal measures of gait, such as walking speed and step length.

Action Statement 3: Effectiveness of balance exercises in persons with HD. Researchers recommend physical therapists may prescribe individualized exercises, including balance exercises, delivered a moderate and intensity to improve balance and balance confidence. These recommendations were based on grade B evidence from 10 studies that examined the effects of exercise programs on clinical balance measures or balance confidence.

Action Statement 4: Effectiveness of breathing exercises in persons with HD. Results from a pseudo-randomized controlled trial, further confirmed in an expert opinion survey led to grade B evidence recommendations. These recommendations included providing breathing exercises, including respiratory and expiratory training, to improve respiratory muscle strength and cough effectiveness.

These recommendations were perceived to help physical benefits, such as improved gait and balance, mental benefits, such as improved mindfulness and communication, and social benefits, such as improved self-confidence, socialization, and a sense of community.

“Although implementation of inpatient multidisciplinary programs, which require extended stays in hospital or rehabilitation centers, is currently not feasible in many countries, there is supporting evidence to suggest that such a model should be considered,” the authors wrote. “Importantly, future work must include economic evaluation and the potential for such programs to maintain high quality years of living with the disease.”


Quinn L, Kegelmeyer D, Kloos A, Rao AK, Busse M, Fritz N. Clinical recommendations to guide physical therapy practice for Huntington’s disease. Neurology. Published online February 4, 2020. doi:10.1212/WNL.0000000000008887

Publication of clinical guidelines for physical therapy in Huntington Disease [news release]. Rochester, NY: Huntington Study Group; Published February 27, 2020. Accessed March 18, 2020.

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